Monthly Archives: September 2015

The Truth About Positive Thinking

IMG_9937for Adele Ryan McDowell

I read a book by Doreen Virtue after I found out about Mary Rose’s trisomy 18 “diagnosis” and was taken back when Virtue said that she believed that all illness stems from negative thought. This includes any cold a child might get or a cancer. According to Virtue, someone in the house has a negative thought and it takes hold in a child’s body causing sickness. I do believe that we attract much through our energy and thought patterns, but Mary Rose’s trisomy 18 was a genetic illness, and I neither attracted nor created it. It troubles me that we blame each other for our children’s illnesses (and our own) whether through negative thoughts or lack of faith.

Years ago I was married to a man who was mentally ill and unable to keep a job. I reached a low point when my friends and family were having babies and going on vacation, while I could not afford groceries or gas for my car. My idea of the good life was being able to afford children and vacation. I read Elizabeth Harper’s book Wishing: How to Fulfill Your Heart’s Desire in the winter of 2009 and decided that I wanted a different life. I prayed and wished for a nurturing and loving partner (I called him my Wish Husband), children, a safe and peaceful home and abundance. I tucked my wishes away on my altar that sat on a piece of turquoise velvet fabric on the floor of my unfurnished bedroom and waited. I started practicing qigong. I studied with Pat Bolger and took a Level 1 training for Emei Qigong. I meditated and prayed, and worked on my thought process. I was tired of coming home to the telephone or electricity being shut off, or tax notices on my door.

It took another 18 months, but I found the courage to walk away from the marriage after nearly 19 years with this broken man whom I had met when I was 18. I discovered many debts in my name after I left. But the wishes worked. I found an amazing lawyer, Debra Marino, dedicated to helping her clients. She fought until the condo was in my name and the equity covered the debts. I went to visit my sister and her family in Switzerland. When I came back the divorce papers were signed and I went to a wedding of some friends soon after dressed in orange and purple and gold. I was free from debt and the burden of an unhappy marriage and decided that I was okay being single and childless. I walked into St. Paul’s Cathedral in Hempstead, New York and there was one other person in the church. I am married to him now, and we have two children. Wishes do come true. But I cannot believe that all of our suffering comes from negative thoughts. My positive thinking may have been a catalyst in shifting my grim situation, but there has still been tragedy since then.

I’ve been thinking a lot about positive thinking since I carried Mary Rose, my daughter who died an hour after birth. I remember being on the table of a naturopathic physician in New Haven many years ago. She blamed my negative thoughts for my pain and state of health. I remember feeling so small on her table, as I did when I was a child and my mother or teacher criticized me. I have spent over two decades studying various spiritual traditions in an effort to better myself. But lately I’ve been thinking that I don’t have to get better. I can accept that I live in a fallen world and that sometimes the people I love get sick and better or not. I once had a student in my office telling me about how her mother “lost her battle with cancer.” I looked her in the eyes and told her “Your mother got sick and died. She is not a loser. She completed her life on earth.” Why do we beat each other down with our words blaming thoughts for cancer or the flu or any other illness?

The missing piece to the positive thinking conversation is that there is a component of karma or God’s will. Mother Gavrilia, the Greek Orthodox nun, says that whatever happens is because God wills it or God allows it. Either way it is the best thing for your soul. That is difficult, especially when children are chronically or fatally sick. I like the idea that we raised our hands before we came down this lifetime and agreed to certain soul contracts and certain dramas to better our souls. Did I have a soul contract with my first husband? Is he the one who taught me resilience and creativity in a tight corner? What about my daughter who died an hour after birth? Do I have a soul contract with Mary Rose to further open my shattered heart and write this book in service to others? Today my son told me that he wanted to send a deeply pink rose from the Botanical Gardens to his sister in heaven. “I will send it to her and then she will get it,” he said. I turned my face away in tears. Did my son have any thoughts that brought upon his sister’s death and this loneliness we have for the one we love?

Elizabeth Harper’s book is balanced because even though she gives us the means to wish or pray for a better life, she does not blame anyone for illnesses. Harper writes

We are so quick, especially in this New Age society, to think we are to blame for illness. We are not. It may be part of the package deal of this life, or it could be a “contract,” as medical intuitive Caroline Myss likes to call it. Whatever it is, illness is there to show us something about ourselves that can be revealed through that suffering. It may also be the only way for us to bring some part of ourselves to the surface (158).

She continues with a partial list of “deeper motivations behind illness” including the connections that our situation give us with others. After an illness or trauma we are able to help others in a way that we could not before. As Arielle Greenberg writes in Home/Birth: a poemic, co-written with Rachel Zucker, about her stillborn son Day,

I never thought I would be writing this. I never thought this would be my story.

But it is, so I tell people, and hold this space (195).

We can each hold the space for our suffering and for those who suffer around us. We can hold the space for the friend diagnosed with a brain tumor or a mother diagnosed with ALS because these things happen.

I’ve been listening to Krista Tippett’s podcast On Being. Again and again her guests talk about suffering. One Buddhist teacher says that everyone suffers on Earth. “But how do you face your suffering?” she asks. How gracefully do you walk through your parents’ aging, your friend’s suicide, another death? The human condition is preponderant on suffering. We are born in the trauma of labor, born after a long journey from a safe watery place through the canal that brings us to the light of this earth. I see suffering all around me and I want to hold people in my arms and tell them that it is okay. We are in this together. I want people to stop blaming each other when difficulties come. Perhaps it was my fault I lived in poverty with a mentally ill person as long as I did. I stayed, didn’t I? But until that veil was lifted from my eyes I could not see clearly. I could not believe that a husband would lie every day to his wife. I could not believe that someone would pretend to have a job. But I learned a lot there, and now after walking through my daughter’s pregnancy and death, and that sharp grief afterwards, I can say that we each have certain things that we must suffer in this life. I am of Greek descent after all, and we do believe in Fate.

If God allows us some suffering, then He also allows the way through it. I believe in being positive, but I also believe in anger and sadness and rage. And when we harness those “negative” emotions, and lead them to the Light within, they are transmuted into joy and we become stronger. For those writers who continue to preach that 100% of everything that happens to us is born of our thoughts, I think about gardens growing, and abundance, but even the cucumber plant withers after she bears all of her fruit. I am at the point in my life when I am ready to accept my broken humanity. I mean well but fall short of my standards. I bless people and pray. And I am learning to accept my frailties and constitution and life. I hope that my thoughts allow me to be grateful every day of life, as I was on the day my daughter was born and died. When our midwife, Grace, said to Mary Rose, “Open up your eyes Baby Girl, and look at your mama,” she did. She opened up the one eye that she could and looked into my eyes and I saw that they were blue. Not everyone who carries a baby with trisomy 18 gets to look into her child’s eyes. I am blessed. And Mother Gavrilia is right. Mary Rose is so very good for my soul.

Photo by Sindy Strosahl

The Bereavement Doula

mary rose leslieDuring one of my prenatal visits I mentioned that I wasn’t sure if I should hire a doula for my second birth. I had been going to a number of doctors’ appointments and did not have much time to think about my needs or labor. There was so much to do to confirm Mary Rose’s “diagnosis” of trisomy 18, to plan for her birth and her death, to see specialists about her defects and to understand her illness the best that I could when medical doctors answered “We don’t know,” to my many questions. Midwife Gloria said, “You should hire a bereavement doula.” And I replied, “How could there be such a thing?” She suggested that I call Leslie Cuffee, and set up an appointment. She was known in her community as a doula who could witness the death of a baby. Leslie’s first birth as a doula was still. When parents need her to walk them through a difficult pregnancy, she is present.

Expectant mothers hire doulas to support them through their labor and after the birth. A doula often spends more time with the mother than a doctor or midwife. They preserve the birthing space and do their best to work with providers to keep the mother’s wishes for her birth plan in place. They also seem to be experts at back massage just when the contractions crescendo, and know of natural methods to work through the hours of labor.

When I met Leslie she told me that I would write a book about Mary Rose. I looked at her confused in my daze of shock and grief. “Forget your poetry and your novel. This is the book that will come first,” she said.  Leslie felt that there was a need for a book about life and death, a book that embraced all babies regardless of their expected outcomes. She is one of the few who held my daughter after she died and smiled, looking at her face. She accepted God’s will for Mary Rose and didn’t question my daughter’s value as a human being. Leslie told me of a birth where a baby was born with its organs outside of its body. She held the tiny body and told me that she was beautiful. I knew that Leslie would love Mary Rose in life and in death.

In her book Birth, Breath & Death: Meditations on Motherhood, Chaplaincy and Life as a Doula, Amy Wright Glenn discusses her spiritual path and her work as a doula and later as a chaplain.  Many birthworkers, be they midwives or doulas, turn to chaplaincy work. A doula holds the space for that newborn to be breathed. A chaplain holds the space for that breath to cease so that the soul can leave behind the sacred vessel of this life and journey on. It is holy work to witness the first and last breath. Wright Glenn writes “Learning how to live involves learning how to die. Love alone is the most potent power illuminating the breath’s journey in between these thresholds. Love is the key. Love is the dance” (47). Mary Rose has taught me to embrace death fully as a part of life. How could I honor her without honoring her death? How could I love her and hold her without freeing her to do the sacred work of her life from the heaven worlds?

Before I became pregnant with Mary Rose, I watched my aunt suffer and die from atypical meningioma. She was bedridden for close to 18 months, her body betraying her desires to move and travel, yet she held onto this life as if it was everything for her. It took her a long time to die. My pregnancy put my aunt’s “young” death at 64 into perspective, but I sometimes reflect on how gentle and peaceful Mary Rose’s passing was, as opposed to my aunt’s struggle and challenge to let go.

We are all going to die, though this seems to be what we fight most in our culture. Some of this is biological. The body will fight with all of its will and programming to survive, but there comes a point when we as a culture can take a step back and accept life cycles. It is not good to live and bad to die. Death comes to all sentient beings and we are transformed. Whether people believe in an afterlife or reincarnation, or nothing at all past the breathing of this body, our bodies will be vacated and they will go back into the earth in some form and become something else: the flower, the field, the air we breathe.

Mary Rose’s birth was long, but Leslie, my midwives and Sindy did not complain. They slept very little and walked with me as I gathered the courage I needed to let my baby go. In my body Mary Rose was safe, but once born would she breathe? Could she eat? The hours before Mary Rose was born were holy. We laughed, practiced yoga, breathed and cried. And when the moment came to enter this world and this life my daughter was welcomed and embraced.

Bereavement and birth might seem contradictory, but sometimes life on earth is short. I am grateful that there are women who are brave enough to face life and death in the quiet and stillness that seems lost in most of our fast-paced, post-9/11 world. In her poem “The Summer Day” Mary Oliver asks “…what is it you plan to do/with your one wild and precious life?” I plan to be present for the transitions that await me, for those I love and for myself. Like the doula, let’s be present for our babies, our parents, our loved ones and even ourselves. Let us bless the bereavement doulas and the chaplains and the ministers who aren’t afraid to hold our hands and wait with us as life breathes us, for the appointed hours.

The Holy Homeopath

file_ignatia-amaraI find myself surrounded by amazing women healers and they hold me up against the frailties of this world. When I was pregnant with Mary Rose, my daughter who died an hour after birth, my tribe included the incredible therapist, doulas, midwives, massage therapist and homeopath. Yes, I use homeopathic remedies even though some believe homeopathy to be a placebo, a nothing, a sham. I see homeopathy as holy healing and I call Aniela, my dear classical homeopath, the Holy Homeopath. The spiritual are one with the physical in this treatment and she sees me for who I am: a broken seeker who walks her path one step at a time, one breath, then another.

I’m not sure why homeopathy is a topic of controversy, but I recognize when people roll their eyes at me when I mention how much homeopathic remedies have helped me. They work for millions of people in India, the Royal Family of England, and people all over Europe and the United States. In Copeland’s Cure, writer Natalie Robins, offers documented research on how homeopathy was once taught at most medical schools in the United States until the American Medical Association (AMA) went to war and successfully took homeopaths out of their association. Why? Money. Homeopathic remedies are cheap and they work. Therefore, patients require fewer allopathic medicines. Where it was once considered unethical to advertise for any pharmaceutical, now the pharmaceutical industry is a powerful force in American healthcare. To understand the extent that homeopathy was used by medical doctors in the 1800s and early 1900s, according to Robins, “More than 1,900 homeopathic doctors were commissioned in the army and navy during the [first world] war” (143).

I started homeopathic treatment in my late 20s. I have a primary care doctor and go when I need to, but I usually start with natural remedies as they are easier on the body and have fewer side effects. With my pregnancy with Mary Rose, she was “diagnosed” by high-risk OB/GYNs and I continued to work through the medical system seeing a neonatologist, infant cardiologist and other doctors. Under Aniela’s care I could tell you the remedies that heal burns, fevers, poison ivy and an autoimmune disorder, but I want to talk about grief. There were at least two times during my pregnancy with Mary Rose, when I cried until my body convulsed for so long that I thought I would never stop. The first time that this happened I texted Aniela. I can’t stop crying, I wrote. Ignacia, was her reply. And within minutes my crying slowed and I was able to make dinner for my son. Even though my daughter had a fatal “diagnosis” I ate well, took vitamins and supplements and refused to take any medicine, even for excruciating nine-day headaches. I love both of my children equally and boundlessly and did not want to treat my daughter with less respect and concern, even though she was expected to die. Under the care of my homeopath, I used ignatia from the shock of the “diagnosis” to the end of the pregnancy and the intense grieving period that followed Mary Rose’s birth and death.

There is a heaviness in my heart center, I typed a few weeks later, I can’t bear the heaviness of this grief. Aniela replied, Take two doses of ignatia in one hour. The ignatia sometimes held for five weeks or a couple of months, but once I uncontrollably cried or couldn’t bear the heaviness of trisomy 18 and my grief, I would take a dose and feel lighter. Aniela gets me. She answers my emails and texts at strange hours. She generously and graciously offers homeopathic advice when other homeopaths would charge fees for every correspondence. I met Aniela through an occupational therapist who is of the Baha’i Faith. “She is the best,” Leigh said, “go see her.” And for once someone used that phrase correctly. I drove to New York City with my fussy baby alone to meet this woman, who is also of the Baha’i Faith. She has been treating us both ever since.

On August 8th, Aniela left me a voice mail message after I texted her that Mary Rose was born and died. “We’re all praying for you. We love you. We love you. We love you and we’re praying for you and dear Mary Rose.” She rocked me in her lull of we-love-yous. A few days later there was a package with a Baha’i prayer that is framed and hanging next to a picture of Mary Rose in my dining room.

The Great Being saith:
The Tongue of Wisdom proclaimeth:
He that hath Me not is bereft of all things.
Turn ye away from all that is on earth and seek none else but Me.
I am the Sun of Wisdom and the Ocean of Knowledge.
I cheer the faint and revive the dead.
I am the guiding Light that illumineth the way.
I am the royal Falcon on the arm of the Almighty.
I unfold the drooping wings of every broken bird and start it on its flight.

Tablets of Baha’u’llah

I received it on Saturday, a week after Mary Rose’s funeral, when I got home from a pow wow I attended with Sindy and Leslie. I had just seen a falcon at one of the booths.

I think of homeopathy as prayer, a subtle energy of God, present in His/Her creations (because God is bigger than either genders), lifting us gently out of imbalance and restoring our life force and energy. It is a long journey, and though we are moving on from ignatia to balance me from my difficult pregnancy, I will always be grateful for the remedy, so subtle it could make a weeping mother wipe away her tears and reach for a knife to cut tomatoes for her son’s dinner.

I call Aniela holy. To be holy is to be fully human and to embrace life which also includes death. It is to breathe in communion with every other sentient being and an inner knowing that we are connected in many ways. Only by walking in unity with each other and our Creator and our Earth can we build the communities that will embrace and support life in all its forms, with healthy DNA or trisomies, with love, always with love.

Trisomy 18: The Range of Possibilities

sunset_birds_clouds_213977          for Nora, who gives us hope.

One of the difficult things about trisomy 18 is the range of possibilities. How can a mother prepare for her baby’s birth when it might be born still or live for a few months? How do you prepare for the labor? Is it time to get a nursery ready? How do you nest? I struggled a lot with this range during the pregnancy and when my daughter, Mary Rose, died an hour after birth, I felt unprepared. That was it? Where were our tender, special moments? How could it be over so quickly after so much anticipation and such a long pregnancy? I know that I am one of the lucky ones. Though my daughter was barely breathing I looked into her eyes and saw that they were blue.

When I wrote grants for a living I depended on data to help me build my case for my projects. I am no stranger to research and data and I know what to do with the numbers when I get them. However, the numbers for trisomy 18 baffled me. The doctors give you a brochure that lists a number of defects that would frighten any pregnant women. The brochure says 92-95% of babies born with trisomy 18 die before their first birthday. The medical establishment says that trisomy 18 is incompatible with life. I wanted to know about that 5-8% who live.

Trisomy 18 is an illness with multiple defects. The child’s brain is severely disabled. In the pictures that I have seen the infant opens one eye, the jaw is slack, the fingers are in a different position, the chin is shorter, the feet are longer, the head is bigger, the ears are deformed. I read all of these defects and worried that my child would be so deformed that I would have a negative reaction to her. I wondered how I would handle my daughter’s illness if she lived. How would I manage my family’s needs when I live far from my extended family? What would the impact be on my young son? I mentioned my fear to the genetic counselor toward the end of my pregnancy and told her that I was concerned that Mary Rose would live and suffer. I mentioned mosaicism and she blurted out: “Your baby has the full-trisomy 18.” I had agonized for months over this, but was never given this information that was apparent from the genetic testing.

I looked and looked for stories, for answers. Who lived? Why? I found a blog about a boy on life support who was three. I found a few other cases of children who were alive and young. Except for very rare exceptions these kids were on life support and had undergone multiple surgeries and hospitalizations to deal with their defects such as heart and other organ defects. They breathed through a trach and were fed through machines. A couple of the children had mosaic trisomy which means that the programming of all the cells are not carrying the trisomy 18 gene. Children with the mosaic illness function at a higher level and often can breathe on their own and even eat.

According to my online searches most of the 5-8% of babies with trisomy 18 who live appear to be on life support. I read about these children in newspaper articles and on blogs. The data seem skewed. For parents who choose not to be on life support, what are the numbers? For parents who choose life support, what are the numbers? I asked doctors what would happen after my daughter’s birth and was told repeatedly “We don’t know. We have to wait and see how strong she is when she is born.” However, in the publication Care of the Infant and Child with Trisomy 18 or Trisomy 13: A care book for families, I read that “5-8% of these infants live past their first birthday without extraordinary measures. And, once a child’s age is greater than a year there is a 60% chance to live beyond age 5 years.” It is estimated that there are 200 people in the United States alive and older than one years old with trisomy 18.

It is important to note here the big controversy surrounding the term “incompatible with life.” People are trying to get this term removed from the description of trisomy 18. I know that very few of these children live, and that they need doctors who will treat them (often doctors don’t want to treat babies with trisomy 18 or 13), but most of these babies do not have the programming in their bodies to thrive. In addition to the defects and disabilities, the children have incredibly weak muscle tone. This is why Mary Rose’s jaw was slack, why her limbs were splayed in all directions when I held her in my arms. This is the reason that most of these babies cannot eat or eat enough. Their sucking motion is too weak if they can suck at all. As a mother of a daughter with trisomy 18 who died, the illness seems incompatible with life, and even though some live, most of these babies die. This is not to say that babies who live don’t deserve to be treated by doctors in the most ethical way. I spoke to a neonatal cardiologist to see about heart surgery for Mary Rose and he did not recommend surgery. He said that if she could live long-term after the surgery, he would be willing to do it, but the heart he said, is only one defect of many. He also informed us that most of the babies who undergo heart surgery in Mary Rose’s condition never come off the trach. Was he being unethical? This is a man of faith who spoke honestly. We never got to the point where surgery was an option but my husband and I decided that we probably would not opt for surgery. We didn’t want to cause any suffering for our unborn daughter.

This week I was very touched by the comments and emails and replies I got to my chapter “Homebirth and the Fatal ‘Diagnosis’” that I posted on my blog last week. One woman reached out to me to tell me of her homebirth in 2000. Her daughter, Nora, was born at home with full trisomy 18 and this is rare. I made the assumption that Nora was gone like all the other babies I know with this illness. Nora’s mother shared her story with me. Her daughter lives at 15 without life support. I found some photos of her family on Facebook. Nora looks like an angel. Her eyes exude the deepest peace. I am so blessed to know her, to add her story to this work. Nora’s story is rare. So how do we prepare for the different outcomes?

A baby was born this week at under four pounds with trisomy 18 and she lives. The baby, Grace Miriam, had three diagnoses and lived for six weeks. Mary Rose slipped away peacefully after birth. Others are born still. How are we to know what will happen? When dealing with trisomy 18, as with all other things in life we can only stay in the moment and breathe. As we all know, some moments change our lives forever. The accident, the diagnosis, the illness comes one moment and nothing is the same. This happens when we give birth. It happens when we hear news we don’t want to know on an ultrasound. And it happens with trisomy 18. But our lives also change suddenly when we meet someone who lights up our soul, are offered a new job, hold a positive pregnancy test in our hand, and sometimes even when we witness a sunset dotted with birds migrating south for the winter. I am open to this continuously changing Universe and I lift up my heart and pray one more time that whatever comes today is for the highest good of all.

Homebirth and a Fatal “Diagnosis”

IMG_0011Tell people: A woman’s confidence and ability to give birth and to care for her baby are enhanced or diminished by every person who gives her care, and by the environments in which she gives birth. from Home/Birth: A Poemic by Arielle Greenberg and Rachel Zucker

 

I have two friends who say that they each know two babies who died at home because of a midwife. I’m not sure who these babies are and what the reality is. Babies die, though we like to pretend that they do not. They die in hospitals and they die at home, though thankfully most of our babies live and thrive. I chose to birth my babies at home and it still surprises me to watch people’s responses. Homebirth makes people uncomfortable. I believe that every woman has the right to make her own decision about where to birth. If I would have been better served in a hospital, I would have birthed there, but I preferred to be in a quiet place with lots of time to let my body do what it had to do as the gateway and entryway for my children’s lives.

Initially I thought that I had to have a hospital birth for Mary Rose because of her trisomy 18 “diagnosis.” I lost my footing after that life-changing ultrasound. My midwife decided to leave her practice and I was going to get to know the midwife, Grace, who would take over. My son wasn’t sleeping through the night. He woke me at least two times each night and refused to nap. I was already in a fog from exhaustion when the ultrasound technician tensed up and the lights went out and I had to feel my way step by step to get to the other side of the pregnancy.

After a “diagnosis” like trisomy 18 there are several doctors’ appointments. I went for an ultrasound of the heart because my daughter had a severe heart defect. The hospital wanted monthly ultrasounds, but we refused this monitoring. Not a week after our ultrasound we got a phone call from a peppy woman who was conducting a research study. She basically said I heard your baby has trisomy 18. I would like her blood which we can extrapolate from your blood. You’ll get a $25 Target gift card for your blood. No thank you.

From there we visited a kind pediatric cardiologist. I believe this doctor to be a man of faith, a man who got the big picture of life. He did not recommend surgery for Mary Rose even if she was born alive. He would work with us to give her some medicines to keep her comfortable but said that she probably would not live as long as three months in the best circumstances. The cardiologist cleared me for a home birth and wrote a letter saying as much. I visited again with the high risk OB/GYN towards the end of the second trimester and was told that I was not at any additional risk due to Mary Rose’s trisomy 18 “diagnosis.” Although she prefers a hospital setting, she did not object to a homebirth. We then visited a neonatologist who was kind, except for one thing. When he described the defects of trisomy 18, he said “she’ll probably look cute to you.” Babies with trisomy 18 are often described as elfin since they are small and have many defects including differently-shaped ears.

It was a whirlwind of information, not enough information, medical appointments, stress, and uncertainty. That range of stillborn through a few months made it difficult for me to prepare myself emotionally. I slowly got a few things ready. My sister sent me very few newborn clothes that my niece wore two years earlier. Isaiah’s Promise sent hand-made blankets and gifts. I had a baptismal gown ready, and how I hoped that Mary Rose would be baptized, not because of any sin she had, but because I wanted to welcome her into our faith with the sacrament. I got the pump out and bought bags to freeze milk. I bought a premie car seat in case we did end up at the hospital and she was too small for my son’s infant car seat. Every time I walked through Target or Babies R Us I wept and tried not to look at the pink cloud of baby clothes. I bought a few undershirts and pink socks. I vowed to do right by my daughter in life and in death. That meant buying a cemetery plot and a coffin, and deciding if we would put her on life support. My husband and I agreed that we would not extend her life briefly with machines. It did not feel right for our family, though I know families who choose differently.

I thought that we would be fine for our homebirth but there was a lot of drama with a nurse manager at pediatric hospice who thought that I wanted to kill my daughter because I didn’t want to put her on life support. She threatened my midwife telling her that the police could charge her with manslaughter if Mary Rose died at home. She turned our pediatrician against us discussing the legal ramifications of Mary Rose’s dying at home. (After checking with the neonatologist and the pediatric cardiologist, they confirmed that Mary Rose’s case was sealed tight with thorough records, that this would never happen.) The pediatrician was initially comfortable with coming to the house for a visit to diagnose Mary Rose with the trisomy 18, but then he would not come. This nurse manager even took the Do Not Resuscitate order (DNR) hostage. The pediatrician was supposed to mail it to me at home but she called him and made sure that he sent it to hospice instead and would not release it until I promised to birth in a hospital. I needed a DNR, a doctor willing to come to the house if she died before we could get to a specialist, and a licensed midwife. I prayed and hoped that these three pieces would come together. (In hindsight, neonatal hospice would have been more appropriate for our needs since pediatric hospice does not understand neonatal illnesses well.)

The tidal wave that hospice brought to my life after I already had things in place for a homebirth speaks to the way our society operates. There is a system in place and everyone is expected to follow it. A homebirth is unusual for most, and so is an infant with a neonatal and fatal illness. Pediatric hospice is very helpful when children are on life support and are facing death. The nurse who was so uncomfortable with my case was operating from a place of fear. She was afraid of homebirths. She thought that Mary Rose would suffer in her death which is not the case with newborn babies with trisomy 18. Instead of educating herself on neonatal illness, she went to war with me and used every pawn she could by trying to instill fear in the midwife and the pediatrician. The pediatrician bought into the fear of lawsuits. Thankfully the midwife, Grace, saw through it.

The controversy with homebirth is real but I am not writing a pro-homebirth piece here. I am writing to say that if a woman has birthed at home and wants to do so again, it is still an option. If a mother doesn’t want to ride the tide of the system, then she is on a raft battling the waves that are trying to take her with them. I was not prepared to have my daughter subjected to tests such as ultrasounds at birth. The hospital wanted her cord blood. And when she died she would have to go through the morgue. “What about religious Jews, Baha’is and Orthodox Christians?” I asked. What if your religion and belief is to take care of your own dead. No one knew anything about this. I wanted to prepare Mary Rose’s body for burial myself. The priest had the casket. We had the plot. I wanted her body released to me. No embalming. No refrigerator. My baby would go from my arms into the church. The doctor answered No exceptions. This has never come up before. We don’t know. We just don’t know.

I felt like I was asking permission to birth on the moon, to send my daughter’s body to the stars in a rocket. My wishes were simple. In the event that we only had a few minutes or a few hours or even a few days, I wanted to hold my daughter quietly and give her a peaceful life. I was not judging the current system, or telling others what to do. I wanted this simple thing for my daughter. I wanted my son to meet her and hold her. I wanted the peacefulness of home. On my 42nd birthday my son got sick, my back was completely out, my mother was coming in three more days to help us, and on this day I found out that I could not birth at home due to hospice’s interference. It was early July. I was exhausted emotionally and thought that we had already done the work to get to the end of a pregnancy to wait for the baby. We had a birth plan, lived a few minutes from the hospital, planned a funeral in utero, and were as ready for life or death as we would ever be. I agreed to the hospital birth so that the nurse could give me the signed DNR. Then I decided that there had to be another way.

We finally found a doctor who would come to the house to diagnose my baby or to pronounce her dead. A child cannot technically be diagnosed until she is born. We were all set except that I was having contractions for three weeks but not progressing into active labor. I was stuck. How could I go through labor only to bury my baby? What if she was severely deformed? Would I love her? Yes! Yes! I wanted to nest, but I couldn’t. I got distracted when my family visited to meet Mary Rose. She waited. They went home. August came as the contractions kept steady.

After Mary Rose was born I did some research and tried to find cases of homebirths for babies with trisomy 18. I only found one case in England. There were several women who started birthing at home but they ended up in the hospital when they did not dilate. And for me, if I had another midwife who was less experienced or afraid, I would not have been able to birth at home. Grace gently used natural ways to encourage labor when I stalled. Perhaps the placenta and baby with trisomy 18 defects do not give the body the proper signals. We have to consider the emotional response to our outcomes too. A woman in labor stands at the threshold of life and death. The soul is born and takes its first breath. It is a holy moment. I knew that Mary Rose would leave us. I hesitated. I did the best that I could.

I am grateful that I had several small miracles to allow me to birth my breech baby in a pool and hold her for the moments that were her life. She was barely breathing at birth and after the placenta was birthed she slipped away. Mary Rose was born under the painting “Healing Companion” surrounded by a quiet and profound love. Her birth was a visitation that transformed those few people who were present. The veil thinned and Mary Rose was born twice, once into our world and once into the next one where she is Light. She was not baptized, yet we were transfigured.

I am not telling my story because I want all women to give birth at home, and I respect the surgeons and hospital staff who help the babies who need them. However, for the mother who has known homebirths and who wants to birth a trisomy 18 or 13 baby at home, please know that it can be done with a willing midwife who is knowledgeable and experienced. The medicalization of birth is another story. Our high infant mortality rates and high mother mortality rates in the hospital setting can be discussed at another time. If you are called to walk through a pregnancy with a fatal “diagnosis” please make your own decision and allow for any possibilities. My midwife says she wants people to stop being afraid of these babies. They live the lives that they are given, and in their defects they teach us to be true to ourselves and our path. I told my sister that my experience with Mary Rose felt like my life was put in a centrifuge and when everything stopped spinning I couldn’t see anything in the same way anymore. Mary Rose focused me, broke me open to love more, to notice the yellow butterfly going by and the light coming through the pine tree. In our tiny fragment of time together, there was profound truth and mercy. These babies are holy wherever they are birthed.

Photo credit: Sindy Strosahl.